today I would like to address the comments Mark made on my blog about my use of the ''us and 'them'' mindset. I must admit I find this subject incredibly difficult: is there a disability subculture, set apart from the dominant, able-bodied culture, or is there one homogenous mass described as 'human'? this question is hard for me to answer, because, as usual, I see both sides of the argument.

The disabled are an odd group of people. Disabled people can belong to any religion, any ethnic group. They may have grossly divergent political views. Indeed, they may have nothing in common with each other, save that they are disabled. With ethnicity (I do not use the term race) one's direct family belongs to the same group, and one may select friends from that group, so the case for a subculture is clearer. Yet, with the disabled, it is not so clear-cut. I have many nondisabled friends, and a nondisabled family. Indeed, even the term disabled is contentious: just because dad can't run as fast as the spandex-clad athletes on T.V, he pointed out last night, does that make him disabled?

The question is, are we a subculture, a group of people who are somehow linked? If so, what links us? The answer, I think, is necessity. Disabled people, for the most part, have certain experiences in common, ranging from being unable to enter public places to being pushed into special schools. It is shared experiences that bring us together - common struggles. We all have similar problems, and I think many people find the knowledge that we are not alone in those problems comforting. Moreover, it is only by coming together and combining wills that these problems may be solved.

Now, this may seem to imply that, as a single group of people, we face an equally united enemy. Not so. I do not think we are being systematically repressed by an opposing culture, just as black people were once repressed by the white people. While I maintain that there are parallels between segregated education and aphartied, the reasons behind the former are not the same as the reasons behind the latter. Segregated education arose out of a grossly misguided concern for the wealth fare of disabled children, rather than a hatred of them, or a will to keep them out of the way. Granted, I suspect that some may harbour the unconscious urge to repress disabled people, butt I am sure these people are in a tiny minority. There is no overt group of people campaigning to relieve us of our rights, but rather an inherited status quo which was not geared towards the needs of the disabled.

By and large however, society is slowly gearing itself towards the inclusion of disabled people. Almost everyone agrees upon the necessity of this inclusion. Thus, there is an 'us', but paradoxically not a 'them', as there is no overt, opposing force. We have already seen that the disabled are a group o9nly because they face the same struggles, but once they work together to remove these problems, they will have as much in common as any other two people.

Thus we are a subculture through necessity. At the same time, I have many good friends who are disabled, but they would be my friends regardless, and the same applies to my nondisabled friends. I am, I must admit, proud to belong to this subculture, which has so many great people in it, but I am equally proud to belong to humankind. You see now why I find this subject so complex. It is full of paradoxes: we are all the same, yet we are all different; the disabled are a group, yet we are innately no different to anyone else.

Regardless, I will continue to campaign for the rights of disabled people. I got a sense of belonging at the Onevoice weekend which I have not felt before - the sense of security one gets when one is around people you have a great deal in common with. This is a group of people to witch I belong and can contribute. There is no 'them' to oppose disabled people, but there certainly is an 'us'.

Posted 09/08/2005 at 11:09:24 (GMT)

Comments

No, not running as fast as athletes does not make your Dad disabled. It makes him impaired. You can have impairments and not be disabled. I have impairments in that I have an arthritic back condition and chronic disease of the gut, but I am not disabled because society does not stop me from doing what I want because of my impairments. If, however, I had been forced into special school and refused access to where I want to go, then I would be disabled.

Disability can be defined like racism. You can be black and not come across racism. Equally, you can have impairments and not be disabled by society.

My daughter, who has mobility impairments, is not disabled at somewhere such as the theme parks in Florida where access is good. However, she has been disabled by a lack of educational opportunities and lack of access elsewhere.

Disability is caused by society, not by people's impairments. When society is structured to be equally accessible and fair to all, disability will stop being an issue.

Posted 09/08/2005 at 21:34:03 by Someone else

Thank you Someone else, that is the point I was making to Matthew. Impairment, disability, handicaps, are all relative terms. I can live my life without worrying that I am not an athlete, and people with disabilties can be helped to live without worrying about the disability. However, racism is different in that it should not exist, and there should be no difference between how people of different races respect each other. People with disabilities will always need special help in some way, depending on their level of disability, and we will always have to push for the resources and support needed.

Posted 10/08/2005 at 09:21:44 by Dad

I heartily agree. yes, we needvarying degrees of support - everyone does - and it is only the lack of support that disables us, not anything else. was I saying anything otherwise?

Posted 10/08/2005 at 09:42:44 by

To add to this arguement, it all depends on which model you use. According to the social model most people are disabled in some way.

Posted 10/08/2005 at 11:24:00 by

After having read all the comments to your "Last nights extras" post and this one, it seems clear to me that you wish to deliberately form an "us" with respect to disabled people. Furthermore, your motives seem entirely selfish. I do not mean this to be an insutlt, simply that wherever your refer to "disabed people" it seems synonymous with "wheelshair-reliant". You mention an inability to enter certain shops as being an experience that all disabled people have. Not once have I heard you refer to people with learning disabilities in this latest discourse. Nor have I heard you mention blind or deaf people. These people will have entirely different set of experiences and yet are generally referred to as being disabled since, as "Someone else" put it, society disables them. I think this stems from an inate human desire to "belong"; you seem to desire to form a clan in which you feel safe.

Back to the point about whether you would be disabled in heaven - and i use "heaven" to mean some hypothetical utopia, should such a place exist - though: is your idea of such a place a society where you can live without the ability to walk free from any kind of aide? I personally would like to be completely unimpeded to do whatever i wish without any support - indeed it is a common premise that upon entry to heaven you obtain wings that let you fly. In short, whether you're disabled in current society or not, would you not rather have a "better", more able body in "heaven"?

Posted 10/08/2005 at 13:38:43 by Jimmothy

given my c.p helps form my views and opinions, my c.p can be saaid to be part of who I am. thus, were I to be cured of cp in this theoretical heaven, I would no longer be me. And I like being me. Moreover, this implies there is something is wrong with my body as it is: nothing is wrong, for if I were to concede that there was, we would have to invent a'perfect human' which we would all become akin to in the afterlife, and there is no such thing. There is no normal.

Of course, my comments apply to everyone. I mention physical disabbility in my examples because I am most familiar with it. the same principlals apply reguardless of whether your blind, deaf, or whatever.

Posted 10/08/2005 at 14:58:14 by

You seem to have missed the point of what I was saying - i suspect most non-disabled people would like to have better bodies were it possible. Most people would change something about them, whether it be to make themselves fit their idea of beautiful or to have the ability to fly or even have a skill that they lack. Most people would chose to improve themselves in whatever way they see as being an improvement. Don't read into this that I am implying that for you to lack your CP would be an improvement, however.

That you have CP serves to provide you with experience and appreciations that many others lack, this is true. And in a society where the cost of making this "impairment" not be a disability (using "Someone else"'s terminology) this would be an all-round benefit to society - your differing view-point would provide diversity within society, which - to use evolution as an analogy - increases the society's stability.

Back to the "us and them" discussion, however:

Different impairments require different facilities to make them not be a disability. For example, you require ramps and elevators while a blind person requires braille and a guid dog (among other things). A common thing I have seen is that many "non-disabled" people are making use of some of these facilities to making life easier for themselves or to overcome minor impairements. For example, people with short-term injuries (such as a broken leg) will make use of elevators in preference to taking the stairs. The same people would not be able to enter shops with a flight of stairs leading up to them. My point is this: there are many people - possibly even a majority - with different impairments, which - in some situations - may be classed as a disability. Do these people belong in the "subculture" you are so keen exists? Because if so, very few people would exist outside of it.

Posted 10/08/2005 at 16:23:33 by Jimmothy

I totally agree with matt on this.

Posted 10/08/2005 at 17:40:38 by L Barbs

ok, perhaps I haventt defines what I mean by subculture. I mean a mutual support community - a pool of people who have followed similar paths. I don't mean it to be an exclusive club: in fact, you can choosewhether or not to participate in it.

as I say, it's very complecated.

Posted 10/08/2005 at 19:08:25 by

It seems as if the subculture to which you refer is more of a group of people who are interested in discussing disability issues and for whom discussing your disability is an important part of your life. If it is a "mutual support community", in which you discuss, presumably, how to get the support your require, it is not an "us and them" situation nor a subculture - it is simply a support group, just like a miriad of others.

Posted 10/08/2005 at 19:59:11 by Jimmothy

I think there are elements of both subculture and mutual support group in relation to the disabled

Posted 11/08/2005 at 13:55:19 by

were I to be cured of cp in this theoretical heaven, I would no longer be me. And I like being me.

So you would have a team of angelic PAs then... I think that issue is deeper than you realise, matt.

Posted 12/08/2005 at 10:20:46 by Mark

On the contrary, bro. I have a greater understanding of this than you. I Like the body I now have. theres nothing wrong with it. it iss society which disables me, not my body.

Posted 12/08/2005 at 13:48:49 by

You clearly don't get the point, matt. I didn't want to spell it out, but it boils down to this: you might like it, but how does that affect everyone else? You don't seem to consider this at all. After all, I'm sure many people would like a team of aides... You spend a lot of time writing about what you want from society, but none writing about what you intend to put back into it; in the end the western world will always demand its quid pro quo, so if you want changes you have to explain how that will help everyone, not just those on the receiving end.

Posted 12/08/2005 at 14:24:36 by Mark

This concept is quite, quite simple, although something tells me you will once again fail to understand. Once society can support disabled people properly, we will be able to contribute properly. we WANT to contribute. we just do not see the necessity of conforming to an arritrary physical ideal.

Posted 12/08/2005 at 14:56:07 by

I'm glad you want to contribute to society, matt, but there's scant evidence of that in your blog. I'm glad I've got you to think about it though. Your assertion that I don't understand you is just rude: you've been banging on about the notion that it's only society holding you back for a while now, and as I pointed out previously, it certainly isn't that simple (although obviously it is from your point of view - all you need is a dedicated team of assistants and you could do anything you wanted...). Considering you always claim "as usual, I see both sides" your comments have been surprisingly one-dimesional.

Posted 12/08/2005 at 15:25:41 by Mark

I dislike the inference that it was you who made me think about this. mark, this kind of thing has interested me greatly, and I have put much thought into it. the social model, as it is called, is accurate: it is only lack of support which disables us. physically,i'm perfect!

Posted 12/08/2005 at 17:58:05 by

Matt recently gave up a whole weekend helping and inspiring young disabled kids and their families. If that's not a contribution to society, I don't know what is. What contributions do you make Mark?

Perhaps active political disabled people could be likened to feminists, where opinions are formed by personal experiences of unfairness which are not necessarily shared by the rest of their family.

Posted 13/08/2005 at 13:42:39 by Someone else

I get jittering when non-disabled people use the contribution, non-contribuation arguement. it suggests that we are lazy and can't be bothered. That's far from the trueth imo. I too want to contribute. I don't see the point in life itself if we can't contribute towards each and society at large. I've always believed there has been a "them and us" culture due to the total lack off understanding of us Disabled from the albe majority. Some try hard and make a real effort to understand but, they won't get it although they are credited with trying. Many more don't bother & would happily rely on negative stereotypes snd tacky disability docus to inform them. I believe all minorities face and them and us view of the world. That's the way society seems to have been shaped over centuries. I've deeply felt the them and us attitude due, mostly to being albino. That ensures people see me differently and treatment as differently as they can without much headache on their part.

Special schooling has also added to the negativity of disabled people and the devide as it's called as, we've been physically devided educationally. It uased to be the same way in employment as well. Dare I say it though, unlike Matt, I always saw the reasons of specials was to have us locked away out of sight to reasure the non-disabled that they won't have to look at us and deal with us too much. Plus, it was a good mechanism (for them) to hold back and ensure we didn't get too above ourselves. Like the modern day working class if you like. Yes, it is changing though but it's slow, painfully slow and it'll take way too long before the them and us devide merge.

Posted 15/08/2005 at 22:18:54 by Justin R

"Someone Else": I won't be drawn to ennumerate the various contributions that I have made to society or will make in the future. I will point out that I meant contributions to society as a whole, not merely the lot of disabled people, and as such anyone who has a job is contributing more than their salary's worth. Having said that, it is typical of many of the readers of this blog to hold a single act of charity by a disabled person up higher than the many years' assistance provided to that person (not that I wish to diminish matt's efforts at all).

I won't address matt's comments further, as we had a rather agreeable weekend and I'm looking forward to his future postings...

Posted 16/08/2005 at 21:41:00 by Mark

I have just followed this thread and found it quite thought provoking but the main point I would like to make is to Mark. I assume you are Matt's brother but don't know if you are older or younger, but as the parent of 2 boys, 1 disabled, I am keen to be fore-warned about the sorts of issues which might cause friction/resentment. In past entries Matt has been extremely complimentary about his siblings so I guess you basically have a good relationship, however it does appear from your messages above that in some ways you are quite resentful of the amount of help Matt has had and continues to have in life. Not knowing you and having met Matt only once I do not really want to pass any judgement but you do seem to be missing the point that many disabled people need "teams of PAs" just to do ordinary things. This is not a luxury or something that is simply the result of laziness - it is what allows many poeple to be independent: they may not be able to feed themselves or wipe their own bums but they can be independent by being in a position to ask someone else to do it for them. My son will I hope be independent and self-determining but he will always need full -time assistance with physical tasks - I am learning that being in control of one's life is what real independence is - not simply being able to *do* everything for onesself.

I am also learning how tiring and at times demoralising it can get to be constantly grateful to others for any little crumb of help they give (whether you want it or not!). Above you mention the many year's of assistance that a disabled person might have had, with the implication that the recipient should be eternally grateful. I'm afraid that being forever in the debt of others is ultimately extremely dis-empowering and disabled people cannot have real equality if the majority of the population hold the view that they must be actively grateful for everything. That is why paying PAs is so much better than relying on volunteers - the relationship becomes "business-like" and there is no enduring debt of gratitude once the salary is paid! Sorry, but this is a bit of a hobby horse of mine! Endless gratitude becomes servility which is not a route to equality (without a revolution!!)

Posted 18/08/2005 at 00:14:34 by Jenny H

To Jenny H:

Thank you for your comments. You are absolutely correct, so I fear that I have misrepresented myself. I'll set your mind at ease: I have absolutely no resentment for the assistance given to my (younger) brother whatsover! It would be extremely mean-spirited and cold-hearted for me to have grown up with matt and not wish him everything that he desires. Indeed, I'm extremely glad that the pa system exists so that he can finally have some independence and enjoy university life to the full, as I did. I'd like to think that I have a strong bond with both my brothers - that's why we can have disagreements in public without souring our relationship! Hence I'll clarify my positions: I have never said that I would not want help to be provided to disabled people, but I want matthew (and others) to be honest in the way that they argue for it. It isn't the same as racism or sexism, where all society has to do is treat people the same but doesn't because of prejudice. Disabled people require special help (I'll choose this as the definition of "disabled") and that help is provided as a decision by society. I am glad that society is already making steps in this direction, and that should be welcomed, rather than feeling discriminated against - and ending up with a major chip on the shoulder. People in general need to be told how the help can be provided, but it must be carefully thought through because the government can't just write a blank cheque - that's why there should be sensible debate on the subject.

Secondly, I absolutely don't want matt to have to feel eternally indebted for assistance, that's no way to live. I was not trying to get kudos for spending time with my brother - merely pointing out "Someone Else"'s prejudices. However, I don't want matt to take anything for granted, and I'm sure he doesn't - our parents have been very good to all of us, and we're very grateful for that; there's something to be said for being grateful for what you have, even if you want more, particularly when we live in the modern western world. So I'd draw the distinction between feeling happy that you have something, and feeling that you owe something in return. Turning now to how this applies to the help provided by the government rather than family, in capitalist economics all transactions must be mutually beneficial, so no-one is motivated purely out of charity and no-one feels indebted - that's what my earlier comment about the western world demanding its quid pro quo was about. The debate here should include how disabled people will contribute once they get the help they require, or others will just not take notice - if it doesn't include that, then society will always regard disabled people as charity cases.

Posted 18/08/2005 at 10:32:45 by Mark

wealth fare made me chuckle.

May I crib from your text for an essay?

Posted 04/11/2005 at 18:24:11 by

as long as you cite me in the bibliography of your work

Posted 08/12/2005 at 22:48:25 by

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